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Thursday, August 23, 2012

Kayli is now in preschool for her second year. She goes to a special needs school with her private duty nurse. While in school, Kayli gets 6 therapies throughout the week, including vision, hearing, physical, occupational, developmental, and speech. Kayli will be using her Passi Muir valve (speaking valve) , FM system ( microphone system that hooks up to her hearing aid), her new eyeglasses, a smart board, stander, lightbox, and other educational yet fun equipment to allow her to learn at her cognitive level! We are working with the school to get Kayli in the school pool for aquatic therapy, trach and all!!! Kayli loves the bath, ocean, and pool! I imagine it's because the water takes gravity and weight off her bones and muscles. Currently, Kayli is short a private duty nurse, so she is only able to tend school 3 out of the 5 days a week. We are orientating a new nurse to fulfill that position. We hope the nurse and Our family is a great match! This first week of school has been all about the head, a part of our body. Kayli has used her fingers to make a smiley face on a cookie, used a glue stick and pushed her hand down on magazine cutouts of heads to make a collage, listened to others sing songs about heads, and played games about heads while touching her own head. It has been a great start to her new school year!

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥